Expectations are Not Always so Great

So it is the end of February. Those who made New Years Resolutions have nearly all abandoned them. Probably quite awhile back. Which is why I did not make any New Years Resolutions. :) And yet I have been facing a crippling sense of failure lately. I have contemplating writing a blog entry and avoiding it. I wanted to commit to blogging at least once a month this year. I have not wanted anyone to know how I have been doing so far this year, though. Far from flourishing, the truth is I feel mostly wilted.

It isn't just since the year has begun. It has been going on longer than that. Partially it is physically. I have focused on that since the new year began and had my doctor dive in do and a WHOLE BUNCH of tests. She says nothing is wrong. Well nothing new. She thinks I am having a particularly bad fibro flare. And also, an attack of depression. Neither of these are new diagnoses. These are things I struggle with from time to time. Well fibromyalgia I struggle with daily, but from time to time it flares up and really challenges me. And if my reoccurring depression decides to join in, well then life gets super interesting. Or rather, super not.

I have spent many days in bed.
Simply because I hurt too much and I was too overwhelmed by that and by everything else to get out.
Other days I have made it to work and then come home only to melt onto my couch. I have watched episode after episode of TV shows. I honestly couldn't tell you what they were about. It was just something to occupy my mind. Keep it from running amok and causing me to get too emotional.

So my doctor has changed up some of my prescriptions. And I am working on some plans of coping better/in more healthy ways. To be honest these things have to run their course. And I have to make it through them. I have to flourish anyway. Or at least not totally wither away. Not too long ago my sister posted this on facebook. It gave me such a feeling of peace.

It is such a simple truth. But truth. Flourishing isn't about being a flower. It isn't about a finished product at all. It is about growth. It is about going to the doctor and talking to her about what is going on. It is about acknowledging things are not great right now and spending days in bed if that is what I need, and then getting up and doing something to change the next day. It is about changing my expectations.

I have been talking with several of my closest friends lately and and we are all going through major changes in our life. All very different. Some are changing careers, some going back to school, some going through divorce or hardships in marriage or relationships. Some are dealing with sickness - either themselves or of significant others. Some are facing huge decisions. But what I keep hearing over and over and over that is the same is that it is not what we EXPECTED to be doing at this age. It is not where we expected to be. We thought we would have things more figured out, be in more control. 

I think that expectations are ruining realities. I want to be the kind of person who can learn to live and love the life I have. Not the life I thought I would have. Or that society thinks I should have. Or that my parents had. That is NOT easy. I am not sure how to get there. A big part of what is going on with me RIGHT NOW is that I had a lot of expectations of how moving back to Nashville was going to go. I imagined, or expected, certain things to happen that haven't. And some things I never guessed would happen have happened and...I am having trouble dealing with those things. That is not what I wanted. This was supposed to be MY TIME and it was supposed to go my way. But....some things take time. 

My expectations are killing me. I think they are killing most of us. We need to learn to let go. To live in the now. To find the beauty in the now. Even in the days that feel like wilting. It is okay to stay in bed some days. It is okay to admit you are not doing as well as you expected. It is okay to let go of those expectations and just...do. Do something different. I want to see where it leads me next.

Why Are You So Sad

I have had that that lyric stuck in my head all day. I am sad, or maybe just depressed and truthfully it doesn't make much sense. It happens every time though, every single time.

I went to another new doctor yesterday. To be tested for yet another scary disease that my symptoms, at least sort of, indicate I might have. So every time this happens (oh yes, it is a fairly normal occurrence. At least once every few years) I take the day off. My appointment was at 11am so I could have easily worked the rest of the day, but I knew better.

I mean, first of all I could have found out I have MS. That would have been pretty traumatic and I would not have wanted to go back to work.

More likely, though, and what did happen, is I heard what I always hear which is 'nope, not this either'. And the truth is, I always get a little bit depressed about it.

You are depressed you DON'T have MS? 

Yeah. Kinda.

The truth is, it gets old being told no all the time. It is frustrating thinking that maybe your doctors have figured out what is wrong with you and then having a specialist tell you that no, it is not this disease either.

When I was diagnosed with fibromyalgia I felt so much relief, because I finally had an answer, I finally had a yes - THIS is what I do have. This is what explains how I am feeling and why my life is the way it is. But the truth is...it doesn't seem like enough. No one takes it seriously enough, not even me. I mean I read things that other patients write and I realize they are suffering just as much as me so I think I probably should be satisfied with that diagnosis. I am not though. I know no one else is.

I want people to understand. I want people to say, "OH, now I understand why she stood us up all those times." "Now I get why she is worried about keeping a job" "Now I see why she can't just eat better or take vitamins and exercise more". "Now I GET it".

If you have something like MS...something that people have heard of...something that everyone knows is bad and hard and REAL...then they get it. But when you have something like fibromyalgia, it just isn't the same. They try to get it. They try to be supportive. And some of them are, please don't get me wrong. I have some amazingly supportive people in my life. But it isn't the same.

Sometime I just wish a doctor would look at me and say, now I get it...you have _insert whatever it is here_ and you were right, something is REALLY wrong. You are not over-reacting. You are not just stressed out. You are not just over weight. You are not imagining it. I am not giving up because the most obvious thing isn't it. We get it now.

But so far, that hasn't happened. I have one more "it isn't this" to check off my list. And that is a GOOD thing. I am actually very glad I don't have MS. It is a blessing. And yet I spent yesterday (and honestly still today) feeling kind of let down. Maybe one day either the disease I do have will be considered  truly as bad as it is, or I will figure out whatever else it is I have that is this bad. Until then I will try not be....so sad.

Week One....survived

So when my doctor proposed this whole TOTAL change of lifestyle diet change she said (and yes, I quote)
"I think if you will do this for ONE WEEK you will be shocked at how good you feel and how much weight you will lose"

Well...shocked I can give her

Good.....not even close!!!

Last week was HORRIBLE!!! Okay I know that I have a lot of health issues that not everyone has so it was probably worse for me than for normal Joe Smoe AND I had really bad eating habits so that probably made it worse as well but seriously...not one of the bajillion blogs I read about switching to clean eating mentioned how HARD it was going to be?? NOT ONE???....

Thank you Internet.
So let me break it down.

Monday and Tuesday - massive migraine and felt light headed and dizzy the entire time. I truly convinced myself this was all about caffeine and protein loss (and it probably mostly was) and I would be fine. Got me some nuts to eat...the world is better right?

Wednesday....this was like Dday for me. I mean the WORST. I was supposed to be taking the morning off b/c we were getting one house ready for photographs for the realtor and a roofer was coming for the other house. Only problem? I couldn't stay out of bed for more than 30 min at a time. It was horrid. I hurt ALL OVER. My fibromyalgia flared up like someone poked it with a fire stick, I thought I was going to be sick all day...it was TERRIBLE. I mean seriously. Really bad.

Luckily that night my awesome friend Allison (no really, she is in grad school in London and for fun in her spare time she is interning with the London Symphony orchestra chorus....see? awesome...) got online to chat with me and give me some encouragement. She dropped the obvious on me...my body was detoxing....and it was not happy. All the chemicals and toxins and crap it was used to having were missing and it was yelling at me. A lot.

That actually made me feel better. At least I had a reason to be feeling so bad. I went to bed (but didn't sleep b/c I forgot to mention....insomnia also has invaded all week...barely sleeping at all)

Thursday got up feeling a little better so I went to work but...downhill as the day went by. At one point late afternoon I realized I was sitting at my desk in tears. I was just in that much pain that it was making me cry. So....left work a few hours early and went home, back to bed. Was really depressed that night. I HATE when my health interferes with work. It makes me angry and helpless feeling all at once. SO that night I learned a new important lesson.

Stress eating is still possible with health food......yep I ate a whole bag of healthy "clean" trail mix. Guess what? Not so healthy when you eat it like that. So that was important for me to realize. I can't just say well I am eating healthy foods so I can do whatever I want. I still have to change my bad eating habits....ESPECIALLY the stress eating one! I was sick as a dog all night long obviously.

The weekend was actually much better. I was tired, still am but everyday has been better than the last. I think maybe my body is finally starting to calm down a bit and accept what is going on. But I just gotta say, this was NO easy thing. Last week was hell. I haven't felt that bad in a really long time. and I still don't feel great. I am sure long term this is going to be a positive change but...either my doctor is clueless about the process or she just didn't tell me. It takes some work to get there!!!

Hoping for a better......

Me and I

When I was a kid my musical choices were fairly limited. Well maybe I should say my Rock-n-Roll'esq musical choices were limited. There were 2 records that to this day I have no idea how got into my parents collection, but my sister and I WORE THEM OUT. They were a Fleetwood Mac and, even more popular with us, an Abba album. We would dance around our apartment holding our hairbrushes up as microphones and belt out those tunes like we had any idea what they were about. We, of course, did not. One of my favorites, however, was a tune called Me and I. I still love it and lately have decided it might be my new theme song.

I am not sure I ever had a theme song before. I am a huge Ally McBeal fan and thus always sort of felt I should probably have  theme song but...one never came to me. This might be it. Hopefully no dancing babies come with it though....uuugh.

I realize that nearly everything I blog about is related to my health and I gotta be honest, I have made peace with that. It might not be the most exciting thing for you as readers but it is my life. Some deal with families or relationships or new adventures...I deal with this. So I blog about this. No one is making you read.

Anyway, back to my theme song. Sorta. Last time I blogged I was in a BAD place. It got worse. I was at a point where I couldn't do anything. At one point I remember talking on the phone to my parents. They were on their way to come see me and it took them 2 hours to get to me. During that time I did nothing. I don't mean nothing useful or nothing productive. I mean nothing. I just sat there. I cried several times. I just couldn't move. I think I got up and went to the bathroom once. I just couldn't even really process making my body move. It was the worst I have ever been.

My parents took me home with them. I got some rest. The flare died down. I started to feel better. I went back home and then I saw my mom two days later. She just shook her head. She said, it is amazing how much better you seem. Without thinking I just replied, oh yeah I am like a different person. I haven't been able to let go of that thought. That is exactly how it is. Only not a totally different person. I always have fibromyalgia. I am always sick. But...I am not always like that. And sometimes I am feeling better but I am not feeling great.

We're like sun and rainy weather

Sometimes we're a hit together

Me and I

Gloomy moods and inspiration

We're a funny combination

me and I

It kind of is that way. I have to deal with both sides of me. There is the side of me that wants to do everything and be a part of life,but I also have be the part of me that cannot do it all and that will pay if I push myself. I can never forget either part of who I am. I am not who I was before. I am not only this person I have become. I am something new. Someone I am still learning about and trying to figure out. Maybe you will like her...us...me?...

Days Like This...

When I was first diagnosed with Fibromyalgia I wasn't thrilled with it. It was awesome in some ways to have an answer to what I was suffering, but it was also an answer that the majority of people didn't actually believe in. I wasn't even totally convinced that my doctor totally bought it. It felt kind of like a diagnosis to give someone you were tired of dealing with.

Truth be told sometimes I still feel that way. Sometimes I doubt the validity of my own pain. Maybe I am just a baby. Maybe I am just lazy and fat. Maybe everyone who is my age and size feels the way I feel. I mean I have had 2 back surgeries already, but it is not like I am the only  one who has ever gone through that. In fact I have a friend very close to my age who has also had two surgeries. She doesn't sit around and complain...she has 2 kids and runs marathons for fun! (Yeah she is kind of my hero!). So...maybe I should just shut up.

And then there are days like today.

Days when I wake up thinking it might be a good day. I don't work till 11:30 so I sleep in till 8:30 and lay in bed with the dog till 9. I am sore but think I will be fine once I get moving. I am wrong. I have to use both hands to grip the rail to get down my steps when I take the dog out. When I sit down to watch TV with my cats I cannot handle having them on me. Every time one of them steps on my leg or nudges my arms I literally cry out in pain. Eventually I have to shoo them away. When I get dressed for work I end up in tears. It hurts that much to put on my clothing. I am at work now. I am here until 8pm tonight. The thought of doing anything for that long is daunting. The idea that in 15 minutes I have to go upstairs and sit at the public desk and smile and greet people exhausts me. The reality that I might have to get out of my chair and go help someone petrifies me.

Every part of my body hurts today. I am tired. I am in pain. It is not in my head. It is not laziness. It is not my fault. It is days like this I know I may not be the strongest person around but I do have to fight. Every single day. Days like today I can only ask of my friends....pray for me. Even the strength to do that seems to elude me.

Fibro Day

So every year on Fibromyalgia awareness day I try to write something about the disease or about my experience with the disease in order to raise awareness about it. Today is that day. I am aware, however, that my most consistent readers have been that for awhile and therefore I will endeavor not to repeat myself from  years past. I thought that this year I would try to answer a few FAQs that I get myself from those who know me and care enough to wonder what is going on with me.

1.) What is up with the butterfly in all the pictures?
I gotta be honest - I don't know. It seems to be the mascot of the disease. I didn't know diseases had mascots but...this one does. It is just a symbol I guess but I honestly have never read anything giving a particular reason or origin story for the use of the butterfly.

2.) Are you in pain right now?
The easy answer is yes. But it is not really that simple. There is a level of pain that I have simply grown accustomed to that I basically always have. So if you ask me that at some points I would probably say "no" but what I really mean is that I am not in any EXTRA pain above that which has come to be normal for me. The truth is, at that point there is no pain that is actively keeping me from doing anything or disturbing my life. If I am quiet and focus on my body, however, I can pinpoint several places that hurt. Maybe everyone can do that...I don't think so though because I don't remember it ever being like that when I was younger. So yes, I am always in some amount of pain. So the reality is that even if you think I complain a lot about my pain...I don't. I only complain when that base level moves up to something that I cannot continue to function normally with. The other pain I just live with.

3.) Do the meds help?
YES!!! I am on cymbalta and I cannot over emphasize enough how much better my quality of life is with it. At one point my insurance decided they would no longer cover my prescription and I stopped taking it. I was shocked at the level of pain I went back to almost immediately. I had forgotten how bad it was before I got on these pills. Having said that however, I am NOT better. The pills, for me, help me keep both my physical pain and my emotional ability to deal with that pain, within a functional reality. Without the pills I felt I could not get out of bed. With the pills, it is hard to get out of bed a lot of days, but possible. I know for some patients cymbalta did not work at all, and for others there are other things that have worked better. I am lucky that I have a doctor who found something that works for me, and even more lucky b/c when insurance denied them to me she went to bat for me and wrote them explaining that they were NECESSARY for the control of my disease. They now fill the prescription again.

4.) How does fibromyalgia affect your life?
That answer is easy...work. It makes working so hard. I have a job that I love and am so grateful for. It is not very physically demanding, it is something I like doing, it is in a relatively stress free environment. It is an ideal job. It is so hard for me. It is hard for me to get in 40 hours a week...Every.Single.Week. I am just tired. 8 hours wears me out. When I get home at night I am not able to do anything else. I don't clean (I try to do that on the weekends...promise). I don't socialize. I don't make phone calls. I change clothes, I make the easiest dinner possible (frozen meals are my friend) and I sink into my couch with an icepack. That is pretty much a daily routine for me. I also make sure I am in bed for AT LEAST 8 hours per night no matter what. Most nights I strive for 10 hours.  One of my major symptoms though is that I don't sleep well. Even though I sleep a lot it is not deep sleep so I never wake feeling rested. And the cycle continues.
Also it does make having a social life harder. I have awesome friends who know that often I simply cannot do things I would like to do. They love me anyway. I am very lucky.

So....there are more but this is already long. I know there are many diseases and so many people who suffer from so many things. I do think it is important to know about things like fibromyalgia, though. It is such a silent disease. I don't look sick most of the time. I can have a great day on Monday and then by Tuesday be a wreck, so it is hard to keep up with - even for me! It is a real thing, though, and it is important for the world to know and believe that. For many years it has not been considered with any kind of seriousness and as a result there are people who are told there is nothing really wrong with them when in fact they are in agonizing pain. There are people who lose their jobs because it seems like they are just being lazy, when in fact they are trying as hard as possible. There are relationships lost and so many lives touched by this, as any, disease. So today I am just trying to do my part to make you aware!

Day 1: The One Where the Christmas Tree (and Karla) Go Down

So it is New Years Day and I have many plans. I am full of good intentions and lists of things to get done. Today in particular, I decide, the Christmas decorations are coming down. The obvious place to start, my tree. My cats have, over the course of December, totally destroyed my tree. There are only 5 ornaments left on it (which was more than I thought there would be) and all of the branches are bent down instead of up or out.

It started off well enough. I had most of the branches off, my cats were busy jumping in and out of the box I was attempting to put the branches into and having a grand old time. Then it happened. One of the branches got stuck. I was twisting it and turning it, determined to get it out, and then my finger got pinched between the tree and the branch.

I dropped the branch and fell onto the floor in pain. For several minutes I laid on the floor, in tears. It hurt that bad. I spoke to myself out loud. "You are okay" I tried to convince myself, "You have fibromyalgia so it just hurts worse than it should. You are fine." When I finally felt I could I looked at the finger. I saw...nothing. No bruising, no blood, no discoloration or swelling. I simply pinched my finger. I made myself finish the job. The tree came down and into the box. I taped the box up, and then I ran to my room and collapsed into bed.

My finger was still hurting. In fact it was throbbing. My breathing was heavy and I could feel my heart beating too heavy and too fast throughout my body, but most notably in that stupid  pinched tip of my finger. My whole body now hurt. My muscles, especially in my shoulders and neck, were tense and my head was pounding in time to my finger. I remained in bed for almost an hour. Not in that intense of pain the entire time. It slowed down and eventually reached a dull ache that was only in my hand/arm.

During that time, though, my brain kicked in. "How stupid" it taunted me.
"It is only a pinched finger."
"You can't even take a Christmas tree down, how do you think you can take care of this whole house?"
"You are pathetic"
"Stop being ridiculous"
On and on...

This is my disability. I am not confined to a wheelchair. I can see and hear and talk. But...some days I cannot take down a Christmas tree.

I decided this would NOT be the day I give up, though. I am writing this down and my pain is at a level where really only that finger is still hurting. I am going to go and watch some TV while it settles even more, and then I am going to continue taking down Christmas decorations. I might not get much done. I am sure this past hour could have seen more accomplished but...I pinched my finger.

Such is life.

Fibro...For Me

So I posted some FACTS about Fibromyalgia the other day. People don't get this disease, and it is easy to see why. It is hard to understand. One of the hardest things about having it, to be honest, is the way no one gets it. So I try to explain it without knocking people over the head too hard with it. But today I decided to go with not facts...but personal feelings. How does it effect ME and my life...so here goes.

I read a quote that was about Fibromyalgia that said "Yes I look fine, No I am not." My first reaction was to say "I wish I looked fine...." because it immediately brought to mind my physical appearance. That is not what the quote was about, of course, but it illustrates what is obviously a big thing to me. I look like crap. I have never been a beauty queen. I try not to care to much what other people think of me, and I hate people who judge others by their physical appearance. All of that said, I hate how I look.

I am 50 pounds overweight. Not just over what I would like to be, over what medically speaking I NEED to be. Most of the time I have some kind of rash/sensitivity going on with my face that makes my pale skin look horrible. I often have to wear baggy clothing and no jewelry b/c the tightness of clothes and/or accessories hurts me. These are all things that are directly related to my fibromyalgia. I have friends and family who will quickly comment and tell me I am beautiful, and I am grateful to them. I am so blessed to know that there are people in my life who love me. End of sentence, no matter what I look like. That is an amazing feeling. I wish it were enough, but the truth for me personally is undoubtedly that I have much lower self esteem b/c I do not look the way I want to look. And to a large degree, there is not much I can do about it.

I always want to tell people, I am trying. I diet whenever I have the emotional strength. I love to shop and have cute clothes and jewelry. I just...can only do what I can do. Sometimes I want to tape a sign to my back that says that. It is not that I am lazy. It is not that I don't care...I just can only do what I can do.

The other big issue of Fibromyalgia, for me, goes back to that same quote above as well. What the person actually meant was people cannot look at her and tell that she is sick. That can be really frustrating. Not just for me, but for others in my life. Sometimes I have to cancel on plans that are important or that have been made for a long time. I say I cannot come but I don't seem sick...I look fine, but I am not. It is so hard to make people understand that. Also the pain and symptoms of Fibro come and go. I might be out at a show or bowling or whatever on Monday night, but if you ask me to do the same thing on Tuesday...it is very possible it might be completely impossible for me. To those who saw me out having a good time on Monday that seems like BS...but it isn't. It is just the reality of fibromyalgia. It changes every day. Sometimes hour to hour. I never know when I will feel how. Sometimes I think it is just easier to never make plans, never agree to anything so I never have to cancel or be disappointed. But that gets lonely...which makes the depression worse, which often makes my physical symptoms even more hard to take. It is a cycle...it never really ends.

I guess the last thing I would say though is, I am okay. I am still a person. I still live my life and enjoy the good things that are in it. I still have friends, I still NEED friends, I still like to have a good time. That is maybe the most frustrating thing about this illness is that people either ignore it as if it isn't real, or they treat me like I am an invalid that cannot handle anything. Neither is true. I am just a person. I have things that I struggle with, just like you do. My things may be different, and they may be hard to understand, but they are just...my things. Life goes on. Thank goodness!

Thanks for reading! I have grown a lot since I was diagnosed with Fibromyalgia. The more I know about what is going on with me the more I can deal with it. That is why I want the people in my life to know about it as well, so they can deal with me too!

Fibromyalgia Awareness

So May is fibromyalgia awareness month. I have been officially diagnosed with this disease for about 4 years now, and yet I learn new things about it all the time. One thing I know for sure, people do not understand it. They do not understand me and why/when I hurt. It is not an easy thing to wrap your head around, not even if you have no choice like me! Here are some facts from Web MD. Later I will try to write a more personal post about how it effects each and every part of my life daily!

What Is Fibromyalgia Syndrome?
A syndrome is a set of symptoms. When they exist together, they imply the presence of a specific disease or a greater chance of developing the disease. With fibromyalgia syndrome, the following symptoms commonly occur together:

• anxiety or depression
• decreased pain threshold or tender points
• incapacitating fatigue
• widespread pain

What Are Fibromyalgia Symptoms?

Fibromyalgia causes you to ache all over. You may have symptoms of crippling fatigue -- even on arising. Specific tender points on the body may be painful to touch. You may experience swelling, disturbances in deep-level or restful sleep, and mood disturbances or depression.

Your muscles may feel like they have been overworked or pulled. They'll feel that way even without exercise or another cause. Sometimes, your muscles twitch, burn, or have deep stabbing pain.

Some patients with fibromyalgia have pain and achiness around the joints in the neck, shoulder, back, and hips. This makes it difficult for them to sleep or exercise. Other fibromyalgia symptoms include:

• abdominal pain
• anxiety and depression
• chronic headaches
• difficulty maintaining sleep or light sleep
• dryness in mouth, nose, and eyes
• fatigue upon arising
• hypersensitivity to cold and/or heat
• inability to concentrate (called "fibro fog")
• numbness or tingling in the fingers and feet
• stiffness

Fibromyalgia can cause signs and feelings similar to osteoarthritis, bursitis, and tendinitis. Some experts include it in this group of arthritis and related disorders. However, while the pain of bursitis or tendinitis is localized to a specific area, pain and stiffness with fibromyalgia are widespread.
What Is the Standard Treatment for Fibromyalgia?There is no fibromyalgia cure. And there is no treatment that will address all of the fibromyalgia symptoms. Instead, a wide array of traditional and alternative treatments has been shown to be effective in treating this difficult syndrome. A treatment program may include a combination of medications, exercises -- both strengthening and aerobic conditioning -- and behavioral techniques.


What Is Fibromyalgia-Related Pain?
Fibromyalgia-related pain is pain that causes you to ache all over. You may have painful "trigger points," places on your body that hurt no matter what medication you take. Your muscles may feel like they have been overworked or pulled even though you haven't exercised. Sometimes, your muscles will twitch. Other times they will burn or ache with deep stabbing pain. Some patients with fibromyalgia have pain and achiness around the joints in their neck, shoulders, back, and hips. This kind of pain makes it difficult to sleep or exercise.

There are roughly 20 different kinds of nerve endings in your skin that tell you if something is hot, cold, or painful. These nerve endings convert mechanical, thermal, or chemical energy into electrical signals that convey information to the brain and spinal cord -- also known as the central nervous system or CNS. These signals travel to areas of your CNS where you perceive the stimuli as the painful sensations you actually feel -- sensations such as searing, burning, pounding, or throbbing.

Research suggests that the pain associated with fibromyalgia is caused by a "glitch" in the way the body processes pain. This glitch results in a hypersensitivity to stimuli that normally are not painful. According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), research has shown that people with fibromyalgia have reduced blood flow to parts of the brain that normally help the body deal with pain.

How Does the Chronic Pain of Fibromyalgia Impact Lives?
Fibromyalgia's chronic pain seems unending. The ongoing headaches, neck pain, aching joints, and painful tender points prevent sleep, causing you to awaken frequently at night. The chronic sleep disorder of fibromyalgia results in increased achiness, morning stiffness, and daytime fatigue. While you want to exercise and be active, you may suffer with foot pain, hip pain, knee pain, or other painful joints. All of these make it next to impossible to exercise with friends or to play with your kids or grandkids.

The constant pain causes more irritation and difficulty dealing with others, including family members, friends, and people at work. For women with fibromyalgia who must take care of family members and work full-time, coping with pain is a challenge. If there is undiagnosed pain and no effective treatment or medication for the fibromyalgia, the overwhelming feelings can lead to irritability, exhaustion, anxiety, social isolation, and depression.

The (NotSo) Skinny on Surgery

So...I had surgery on New Year's Eve. Whoo...party! I found out late December that I needed the surgery and I knew that if I was going to do it I would have to find a way to do it before the new year started. My insurance deductible restarts in January and there was no way I could financially handle the cost if I waited until then. So my doctor (awesomely) did surgery on a day that he normally only does office visits and I spend New Years in a hospital.

This was not my first surgery. Seven years ago, when I was not quite 30 I had the same surgery. I had been having pain in my right leg for a long time. I had taken muscle relaxers and gone to physical therapy but neither had any effect so my doctor sent me for an MRI. I had a ruptured disc. We immediately scheduled surgery. The doctor told me there were a few other options but the one most likely to rid me of the pain permanently was surgery, and since I was young and fairly healthy we just went for it. Recovery sucked, though to be honest I think I have blocked the memory of most of it, but all in all it improved my life quite a bit. At the time the doctor told me that I was the youngest patient he had ever preformed that particular operation on, AND that it was one of the largest ruptures he had ever seen. Lucky me. Oh well, end of story. Right?....

Not so much. Apparently 2-10% of people RE-injur the same spot on their disc and seven years later...that is exactly what happened. This time, though, I was not so healthy. I have been struggling pretty hard core with fibromyalgia for several years now and pain is a constant companion for me. When that pain started getting so bad I feared I would lose my job I knew something had to be done. But not surgery. I did EVERYTHING else first. I did not want to have another surgery. I did not want to lose that much time at work, I did not want to pay for it, I did not want my body to have to go through with it, I did not want my parents to have to come take care of me, and most of all I did not want Michael to have to deal with it. I took pain pills. I did physical therapy. I lost 25 pounds. I had steroid injections. I just ignored the pain. None of these worked. Finally I had to give in and agree...it was time for surgery. I discussed with my doctor the two options we had. I could repeat the same surgery, which he strongly suggested. My other option was a much bigger, longer and more invasive surgery in which they would completely remove one or more of my discs and replace them with fake ones. My initial instinct was to just go ahead and get the bigger surgery over with. The doctor convinced me, however, that was not necessary at this point. Man I wish I had followed my instinct.

During surgery there were complications. There was apparently a lot more scar tissue from my first surgery present than he anticipated. While trying to scrap all of that away to get to my disc the doctor nicked my spinal fluid sac. Yeah I don't remember what its called but apparently it is a sac that holds your spinal fluid. Mine was leaking. This is NOT a good thing. The doctor (and a colleague he called in to help) was able to stitch the leak up and finish the surgery. When I woke up, however, I was informed I would need to lay FLAT on my back for a solid 24 hours to insure the stitches would not break. This is not fun. This is torture basically...especially for someone who just had surgery ON her back and a huge sore that she was now lying directly on top of. The fun didn't end there.

When the doctor came to see me the next day he explained to me that the damage to my disc was much worse than the MRI had shown. Basically if he had realized the extent of the damage he would have done the larger surgery. Having already begun the small one, however, he could not switch. The point of entry and so forth would have been totally different. I have seen him twice since then. Both times he has told me that while he hopes this surgery will give me some short term relief, the likely hood is VERY great that I will eventually have to go back in and do the larger surgery.

So...I am recovering. It is very slow going. In some ways it is much easier than last time. I can tell technology is better and I was able to get up and move around much sooner than last time. But my body is so worn out. I am exhausted...constantly. I was eager to get back to work and be a totally different person, to have a lot of energy and enthusiasm...in short to make up for the way I have been so lacking lately. My second week back on the job (only part time so far) and I find myself more lacking than ever. I have such a short temper with Michael and I hate that he is affected by my pain. I am discouraged. I know in my head that I need to give myself more time. Surgery is never easy on anyone, and for someone with fibromyalgia...well it is no surprise I am having a harder time healing and feeling well. But even though I know that I find myself unable to find any comfort in that knowing.

I am ready to feel better. I am ready to embrace life and enjoy my days. I am ready to stop emotionally eating everything I can find and then being depressed b/c I have gained so much of my lost weight back. I am ready to stop complaining all the time. I am ready to have a clean house. I am ready to go out and spend time with my friends and family.

My body...it would seem....is not.